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Kevin Schaefer started the topic Podcast 79: Ainaa Farhanah, Graphic Designer with SMA in the forum Flash Briefings and Podcasts 2 days, 2 hours ago
Hey everyone! Hope you all had a great weekend.
Check out the latest episode of the podcast here. I talked with Ainaa Farhanah about her life as a graphic designer with SMA and growing up. She also discussed topics like family life and…[Read more]
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Kelly Miller replied to the topic Trying to Keep Expectations in Check in the forum Adults With SMA 5 days, 18 hours ago
Lupa, that’s another extremely frustrating aspect of the whole thing. I can’t decide whether to cry or scream when I clearly know how to do something, and would be happy to tell someone how, but I can’t do it myself b/c of strength and mobility issues!
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Kelly Miller replied to the topic Finally Approved for Evrysdi! in the forum Roche and Genentech- Evrysdi (risdiplam) 1 week ago
You’ve fought a hard battle, and you deserve a few screams for a positive outcome. Congrats!!! Insurance company 0, warriors with SMA 3,000,000,561, and counting.
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Kelly Miller replied to the topic Trying to Keep Expectations in Check in the forum Adults With SMA 1 week ago
I totally get what you’re saying DeAnn about not knowing where to draw that line between getting what I need and asking for too much. Family doesn’t like taking money unless it’s a huge job, so how do I show my appreciation for those smaller jobs that seem to pile up? I’ve found that when I want to give thanks for several things somebody has done,…[Read more]
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Kelly Miller replied to the topic The Struggle is Real in the forum Adults With SMA 1 week, 5 days ago
This one hit me because I’ve had to fight off family and friends to get what I wanted. Swimming in a pool or the ocean isn’t worth all the hassle and, more importantly, the fear involved. Really getting in any body of water meant for recreation is not something I’m willing to do. I’m terrified of getting in the water and fear my head will go…[Read more]
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Kelly Miller replied to the topic Updates? in the forum Roche and Genentech- Evrysdi (risdiplam) 2 weeks, 3 days ago
They just released studies showing the expected results from Evrysdi aren’t going to come for 1-2 yrs. I didn’t take Spinraza, but I’ve been on Evrysdi for4 months now. My husband thinks my breathing has gotten better, stronger, and we’ll find out Thursday when I go for a pulmonary function test. I feel stronger in one of my feet and my trunk…[Read more]
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Kelly Miller replied to the topic Covid Precautions in the forum Coronavirus (COVID-19) and SMA 2 weeks, 6 days ago
I think it should help if you’ve even gotten your 1st vaccine shot. My husband read that several countries in Europe have discovered that aspirin, just plain aspirin, reduces the Covid symptoms and keeps people from getting so severe they end up on vents. Worth a try. I don’t know why we haven’t heard about this, except the docs here push Tylenol.
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Kevin Schaefer replied to the topic Notification emails in the forum SMA Forums Welcome Lounge 3 weeks ago
Hi Zicari! I’ll put you in touch with our IT director. Look out for an email from me soon.
Hope you have a great day!
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Kelly Miller replied to the topic Columnist Writes About Throwing Away Her Vaccine Shot in the forum Coronavirus (COVID-19) and SMA 3 weeks ago
On my way to get 2nd next Wednesday. No problems with 1st.
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Kelly Miller replied to the topic Preparing For First Vaccine Shot in the forum Coronavirus (COVID-19) and SMA 3 weeks, 5 days ago
Mine was also a big nothing. I didn’t take anything going in, and I had no symptoms of any kind afterward. The only thing was my arm was sore for a few days. I had the Pfizer.
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Kelly Miller replied to the topic First Activity Post-Vaccination in the forum Coronavirus (COVID-19) and SMA 3 weeks, 6 days ago
It will be to go downtown to our old part where I live in St Augustine, Florida. There are all sorts of shops, places to eat a variety of treats, and the people watching of tourists from all over the world is never-ending!
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Kelly Miller replied to the topic Going from Rear-Wheel to Front-Wheel Drive in the forum SMA Assistive Technology/Equipment 4 weeks ago
I’m so sorry you’re having trouble with your fwd on your new chair, DeAnn! There’s nothing worse than the excitement of a new chair being squelched by a major problem like how it drives. After 10 yrs of mid-wheel drive, which I loved (sorry), I also had to go to fwd. I had the exact same issue with those stupid little wheels on the back. I also…[Read more]
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Kevin Schaefer started the topic Motivation Monday: Things are Looking Up in the forum SMA Forums Welcome Lounge 1 month ago
Hey everyone! Hope you all had a great weekend.
Sorry I’ve been a little quiet here lately. My main job at this site’s parent company has kept me busy, but I enjoy reading posts and conversations here.
I wanted to share my general feelings of optimism and hope right now. With all the chaos and uncertainty we’ve all experienced in the p…[Read more]
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Kelly Miller replied to the topic Help Me Figure Out What to Watch in the forum SMA Forums Welcome Lounge 1 month ago
I didn’t know they were married! How cool. I got a little tired of it these last couple of seasons, but it was good before that. We just got done with The Crown. Even my husband liked it. Or there’s Yellowstone, or Killing Eve.
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Kelly Miller replied to the topic Here's How I Received the COVID-19 Vaccine in the forum The SMA News Today YouTube Channel 1 month ago
Florida just opened up for those with all pre-existing conditions, and Mayo, where my doctors are, started giving the vaccine. I got an appt for March 5th, receiving the first dose of the Pfizer brand shot. It went off without a hitch, and the only side-effect I experienced was a sore spot on my arm for several days. I’m due back for the 2nd dose…[Read more]
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Kevin Schaefer replied to the topic Injection site question in the forum Spinraza 1 month, 1 week ago
Hey Mike!
I have always gotten mine through cervical injections. I’ve never had any side effects and I’ve definitely experienced benefits. I’ve written about it in my column. Here’s one from a while back. It’s an option worth at least discussing with your neuro.
Hope this helps!
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Kelly Miller replied to the topic Meeting With Dietitian in the forum Adults With SMA 1 month, 1 week ago
I’ve seen a dietician one time, and that’s all I found tolerable. I tried getting information regarding switching from my formula due to severe stomach pain that had developed over time with this same fiber-rich formula. She didn’t want to acknowledge at all that it could be the extra fiber over the previous year causing, not only my pain, but…[Read more]
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Kevin Schaefer replied to the topic Podcast 77: Jeremy Camp, SMA Parent and Advocate in the forum SMA Parents and Caregivers 1 month, 1 week ago
It’s not haha. I made a joke about that in the intro.
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Kelly Miller replied to the topic Podcast 77: Jeremy Camp, SMA Parent and Advocate in the forum SMA Parents and Caregivers 1 month, 1 week ago
Hey Kevin, is this Jeremy Camp the Christian singer???
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Kevin Schaefer started the topic Podcast 77: Jeremy Camp, SMA Parent and Advocate in the forum SMA Parents and Caregivers 1 month, 1 week ago
Happy Wednesday!
Check out the latest podcast episode here. I talked with Jeremy Camp from San Diego, California. Jeremy and his wife Amanda have three children, and their youngest son Asher has SMA Type 1. He talks about his family’s SMA journey, hi…[Read more]
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